Category Archives: Wise Before their Time

New Review: “An Incredibly Important Read”- 5 stars

When Wise Before Their Time was first published in 1992, it served two purposes – to educate people on what life was like for the heartbreakingly large number of young people (and god, they were young) who were living with HIV and AIDS around the world, to try and beat the stigma and combat false information; and to directly speak to people who had the disease and who were feeling its often isolating and alienating consequences. I was born in 1995 and therefore missed out on a majority the horrors of the pandemic, but as Ann Richardson states in the foreword, my generation and the ones that come after it, are the reason why this book needs to be republished – so that people do not forget the horrors and fears of the past and, in some places in the world, the present; that we remain educated and continue to stand in solidarity with people who are HIV-positive and those living with AIDS.

I suppose I find some comfort in how much has changed in just my lifetime, a mere twenty years although to some it must feel like a millennia – HIV screenings have become commonplace with pre- and post-exposure drugs becoming far more readily available; the creation of needle exchange programmes in many countries around the world; and, more people than ever are engaged in an open and honest discussion about all aspects of the disease. Also, at least in my part of the world, living with HIV/AIDS is no longer seen as a negative on someone’s character and it is no longer solely talked about in hushed voices behind closed doors, moving into classrooms, university campuses and many other social arenas.

And I think that we have every person involved in the creation of this book to thank for a small part of that being made possible.

Each one of the voices in Wise Before Their Time is powerful and sobering. They show the everyday realities of living with a disease that people, including doctors as their tales repeatedly show, knew virtually nothing about. They talk honestly and incredibly openly about all aspects of the experience of living with HIV/AIDS – from how they got their diagnosis, to confront their own mortality, to telling friends and family members, to their hopes for the future. Expanding on the latter, there is a definite sense of hope that is forges the undercurrent for the entirety of the interviews as, no matter how long the person had had the disease or what part of the world they lived in, they refused to give up, every single one of them. And that is surely, the true definition of inspiring.

Cassidy

Older women and the AIDS epidemic

Do you remember the terrible AIDS epidemic in the 1980s and 1990s? Were you directly affected by it? We older women are all old enough to remember. But for some, it may have passed by as an awful situation that happened to other people, with little impact on their family or friends.

And for others – more than is often recognised – it had a dreadful import. Many were reluctant to talk about it to anyone. It was a time of great stigma and shame.

AIDS and Women

Because HIV was most rife in the gay community, it was often thought that it did not have a big impact on women. Yet, there were some women who acquired HIV through other routes, such as needle-sharing or partners who brought it home to them.

But to limit discussion to these women is to misunderstand the nature of human relationships. Whether or not we had HIV ourselves, we were also mothers, sisters and friends. Some of us worked in professions, such as dance or theatre that were heavily implicated. Many of us were deeply affected.

Wise Before Their Time

In the late 1980s, I met – and became close friends with – a young man who had been living with AIDS for a long time and was very active in the HIV/AIDS community.

In 1991, he was organising an international conference in London of people with HIV and AIDS and we decided to write a book based on interviews with some of the participants. In all, we interviewed over 20 people from 15 different countries about their lives.

These mostly young men and women described their efforts to cope with the stigma, blame and guilt associated with the disease. They talked about their difficulties in telling their parents, partners and friends. Not to mention coming to terms with a very early death.

The book, Wise Before Their Time, was published in 1992. Sir Ian McKellen wrote a Foreword in which he said, “this collection of true stories is as powerful as any great classic of fiction.” My friend did not live to see its publication. See https://myBook.to/Wise.

Bringing the Significance Home

I always saw a major audience for this book to be the ‘hidden’ mothers all over the world. Some might be too ashamed to tell their friends or neighbours about their son with HIV, while others might be grieving for a son who died too early.

The significance of HIV for all sorts of women was brought home to me on one very memorable occasion.

My parents were living in a retirement community, which sometimes invited residents’ children to give public talks, based on their expertise. My father was keen for me to give a talk based on this book.

Since AIDS was not a disease discussed much by ‘respectable’ people, I suspected this was not likely to be a very popular event! But my father was very well liked, and he told everyone that they had to come. The hall was therefore packed.

Silence

I did readings from the book for half an hour or so. At the end, there was a short silence before any applause. One friend of my parents told me afterwards, “We were all stunned”. But there was enormous response, with active questions and discussion.

Afterwards, I was swamped with women wanting to talk to me about their own situation. They wanted to talk about their sons, their brothers, their friends.

One woman asked me to come to visit her, because her son had died of AIDS, and she had never told anyone at all. Another left some cash in my parents’ mailbox with a request that it be given to an AIDS charity.

It showed how many women were affected by the disease, yet were suffering in silence, perhaps not realising how many other people were in the same situation.

AIDS is no longer a fatal disease, and people diagnosed with HIV can expect to live a normal life span. But I recently decided that Wise Before Their Time would have historical interest and I have now reissued it.

If you were affected by AIDS – or even if you weren’t – I hope you will find it very powerful indeed.

This post was first published by SixtyandMe (http://sixtyandme.com/remembering-the-aids-epidemic-and-the-lessons-we-learned/) and should not be re-blogged

“As powerful as any great classic of fiction”

So said Sir Ian McKellen in his Foreword to my book. And it is.

Do you remember the terrible times of AIDS and HIV in the 1980s and 1990s? If not, are you curious to learn what it was like for those diagnosed?

Wise Before their Time, first published in 1992, shows in moving detail what it was like to live with HIV/AIDS when there was no real treatment for this life threatening illness. It tells the true stories of over forty young men and women from all over the world attending an international conference of people with HIV and AIDS in London in 1991.

I have added a new cover and a short introduction to the new version, but the book remains essentially the same.

These were very young people (most were in their twenties and thirties) having to cope with an unexpectedly shortened life span.

They describe the difficulties of telling their parents, friends and partners of their diagnosis, while trying to cope with the day-to-day problems of staying healthy, keeping in work and supporting their friends.

They all experienced enormous stigma, blame and guilt because of the disease. This can be seen in all kinds of ways ­– from small things, like an Irishman being disappointed that friends did not want him to play with their child, to larger ones, such as man being placed alone in an isolation hospital in Goa for some months with no help.

They all knew others who had died. And one mother tells the story of the death of her toddler.

Yet this is in no way a struggle to read. It is touching, it is enlightening and it is sometimes funny.  But most of all, there is virtually no self-pity. On the contrary, the participants were committed to celebrating the joys of life to the full. Which is why I chose the title – they were, genuinely, wise before their time.

For more information or to buy: https://myBook.to/Wise

Five star review from an excellent journalist

Brave Voices from the Dark Era of HIV/AIDS

“When AIDS first hit the headlines in the early 1980s, there was widespread fear and ignorance. I remember an ernest young fisherman coming up to me on a beach in Sri Lanka in the summer of 1986, asking nervously whether one could catch AIDS from kissing.

These days, attitudes to the disease — and to the HIV virus that can lead to it — have changed considerably, partly because of more widespread scientific knowledge but largely because those who can access antiretroviral drugs (dispensed free to infected men and women in many countries, including the UK) can often live a normal life. AIDS is no longer an automatic death sentence.

So the context in which Ann Richardson has reissued her book of testimonies from people living with (or dying from) HIV/AIDS has changed considerably over the two decades since she and her (now deceased) collaborator, Dietmar Bolle, first produced it.

Nonetheless, there is a freshness and an immediacy in many of the spoken and written interviews with people of both genders, of different ages and from different cultures. The book is arranged thematically, covering major aspects of how people came to terms with their condition, who they told and how and the sort of support networks they developed — or their experiences of rejection and prejudice. The stories are often moving, even tear-inducing, and also occasionally funny. Yes, HIV/AIDS before drug therapy was a terrible plague, which particularly hit Western gay men and heterosexual Africans and their children.

But what comes over most strongly from many of the people who feature in this important book is their fortitude, in some cases their stoicism, and often intimations of real love.”

Jonathan Fryer

For more information or to buy: https://myBook.to/Wise